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BACKGROUND AND OBJECTIVES:

Antenatal consultation between a neonatologist and expectant parent(s) may determine if resuscitation is provided for or withheld from neonates born in the gray zone of viability. In this study, we sought to gain a deeper understanding of uncertainties present and neonatologists’ communication strategies regarding such uncertainties in this shared decision-making.

METHODS:

A prospective, qualitative study using transcriptions of audio-recorded antenatal consultations between a neonatologist and expectant parent(s) was conducted. Pregnant women were eligible if anticipating delivery in the gray zone of viability (22 0/7–24 6/7 weeks’ gestation). Over 18 months, 25 of 28 pregnant women approached consented to participate. Applied thematic analysis was used to inductively derive and examine conceptual themes.

RESULTS:

Inductive analysis of consult transcripts revealed uncertainty as a central theme. Several subthemes relating to uncertainty were also derived, including the timing of delivery, NICU course, individual characteristics (of physician, expectant parent(s), and fetus or neonate), and consequences of the decision for the expectant parent(s). Analysis revealed that uncertainty was actively managed by neonatologists through a variety of strategies, including providing more information, acknowledging the limits of medicine, acknowledging and accepting uncertainty, holding hope, and relationship building.

CONCLUSIONS:

Uncertainty is pervasive within the antenatal consultation for periviable neonates and likely plays a significant role in decision-making toward postnatal resuscitative efforts. Uncertainty complicated, or even paralyzed, decision-making efforts while also providing reassurance toward a positive outcome. Directions for future study should consider whether advanced communication training modulates the impact that uncertainty plays in the shared decision-making encounter.

What’s Known on This Subject:

Shared decision-making regarding the provision or withholding of resuscitation at time of birth for neonates born in the gray zone of viability is highly variable, with prognostic challenges inherent to uncertain short- and long-term outcomes for extremely preterm neonates.

What This Study Adds:

In this study, we used real-time audio recording of antenatal consultation between neonatologists and parent(s) to provide understanding of uncertainties present and neonatologists’ communication strategies to address such uncertainties to gain a deeper understanding of shared decision-making in the antenatal clinician-parent encounter.

Anticipated delivery of a newborn at the limits of viability remains a challenging dilemma.18  The American Academy of Pediatrics recommends antenatal consultation between expectant parent(s) and a neonatologist when delivery is anticipated in the gray zone of viability, 22 to 24 weeks’ gestation. Individualized and family-centered decision-making should be used to decide anticipated management regarding the provision or withholding of resuscitation.2,3,5 

Practice variability13,8,9  for neonates born in the gray zone of viability is driven by uncertainty regarding survival and expected morbidity, explicit and implicit biases toward outcomes, and providers’ communication. Decision-making occurs in an unexpected, unfamiliar, time-pressured, and emotionally heightened setting for expectant parents.3,10  Prognostic uncertainty is complicated by the limited ability to accurately predict gestational age and the influence of multiple preconception and pregnancy-related factors for the pregnant woman.3,8  Published data informing antenatal decision-making are challenging to generalize, as they reflect outcomes at quaternary academic NICUs and are subject to publication lag.11  Postnatal prognostic models may be used to provide a more effective means to individualized decision-making;12  however, those models preclude antenatal decision-making rooted in the preferences and values of expectant parents.3,7 

In the NICU, anticipated and unanticipated short-term complications can have profound effects on the survival and long-term outcome of the infant. Such prognostic uncertainty may invoke apprehension and providers’ desires to reduce it,13  but the existence of uncertainty is inherent to neonatal-perinatal medicine and may not be prohibitive to decision-making. Rather, providers’ ability to remain aware of and acknowledge uncertainty may be the most critical skill in navigating decision-making.14 

In this study, we sought to gain a deeper understanding of the uncertainties present and the communication strategies used by neonatologists in the antenatal clinician-expectant parent encounter.

This qualitative study is informed by applied thematic analysis (ATA),15  an inductive approach that is used to analyze textual data to provide description, understanding, and pragmatic discussion that goes toward solving practical problems.15  Theoretical models derived by the ATA process are systematically grounded in the process of data analysis and in the data themselves.15  To examine how uncertainty in the gray zone of viability is managed in shared decision-making, the data sources for this study were the anonymized transcriptions of 25 real-time audio recordings of 25 gray zone antenatal consultations recorded naturalistically at the bedside. The study was approved by the Mayo Clinic’s Institutional Review Board (institutional review board 15-003365).

The antenatal consultations took place between either a neonatologist or neonatology fellow (referred to as neonatologist) and pregnant women. Recorded antenatal consultations were purposively sampled by using the following inclusion criteria. Neonatologists were eligible for inclusion if they practiced in the study hospital and were responsible for undertaking antenatal consultations. The coprimary investigator (C.A.C.) participated in the study given the critical role in patient care as 1 of 8 attending neonatologists at the study site. The senior author provided an additional layer of expertise as a clinician trained in palliative care and advanced communication. Pregnant women were eligible for inclusion if they were English speaking and admitted to the study hospital for complications of pregnancy that resulted in a diagnosis of anticipated delivery in the gray zone of viability. The gray zone was defined as 22 0/7 to 24 6/7 weeks’ completed gestation or when additional factors prompted shared decision-making regarding the provision or withholding of resuscitation. As such, our study included 1 pregnant woman at 25 1/7 weeks’ gestation, with a pregnancy complicated by severe intrauterine growth restriction.

Over 18 months, 28 pregnant women were approached by the study team in person after permission from the patient’s care team was obtained, which considered their decisional capacity and appropriateness of the timing of the consent process so as to respect the stressful setting for the patients and as not to interfere with necessary care. Individuals obtaining consent provided study information to the pregnant woman and, if present, her support person, in both verbal form (reading of a consent script) and written form (providing patients with a study brochure and consent form for reference).

Twenty-five of the 28 pregnant women approached provided written consent to participate. Additional eligible pregnant women were not approached for consent because of precipitous labor and delivery or unavailability of the study team at the time of presentation. Audio recorders were switched on at the start of the consultation and stopped at the end. Participants were informed that they could request the audio recording be turned off at any time; no recording was interrupted in our study.

Participant demographic data, including sex, race, age, marital status, pregnancy gestation, and birth outcome, were collected via chart review by the study team.

Transcriptions of the audio recordings of the antenatal consultations were anonymized while delineating the role of the individual speaking, assigned a randomly generated reference number, and transcribed by expert qualitative transcriptionists. Analysis did not separate codes derived from responses of the neonatologist, pregnant woman, or support person.

ATA advocates that analysis benefits from the expertise of multidisciplinary perspectives.15  The research team for this study consisted of two neonatologists (C.A.C. and B.D.K.), two medical sociologists with expertise in neonatal medicine (K.C.) and conversation analysis (K.S.S.), and two pediatric palliative care specialists (C.A.C. and M.J.T.). The research team used ATA to interpret the transcribed antenatal consultations in a systematic way.15  First, the team (blinded to the consulting neonatologist), read 5 transcripts to discuss, determine, and agree on the major themes arising from the text that were of interest to understanding the pragmatic concern in clinical practice of shared decision-making in high uncertainty. Second, taking these major themes as a basis, the resultant code book was developed by the coprimary investigator (K.C.) who then returned to the remaining 20 transcripts to complete preliminary coding. Third, preliminary coding of each transcript was refined by group consensus through a process of monthly group meetings over a period of 15 months. These discussions were used to achieve consensus over transcript coding and to ensure analysis answered relevant and practical questions relating to neonatology clinical practices and antenatal consultations in the gray zone of viability. A total of 4 themes were derived through our analysis, of which we report on 1, namely, uncertainty.

The study group included 25 pregnant women with a median age of 28 years (SD 5.3), 72% of whom were married. Of these women, the self-identified race distribution consisted of white (19 of 25), Black (2 of 25), Hispanic (2 of 25), and Indian (2 of 25) women. The majority (22 of 25) of antenatal consultations included the woman’s support person. Support persons included expectant fathers, significant others, expectant grandparents, and close friends present either in person or over the phone at the time of the consultation. Indication for prenatal consultations varied (Table 1). The most common indication was preterm premature rupture of membranes. Median gestational age at the time of consultation was 23 0/7 weeks (range 21 2/7–25 1/7 weeks, SD 5.88 days). A total of 8 neonatologists and 2 neonatology fellows conducted consultations. Of these, 20% were female and 100% were white. Equal weight was placed on each neonatologist’s consultations, including those conducted by the coprimary investigator (C.A.C.), with the number of consultations completed by each physician varying between 1 and 3 of 25 consultations (Table 1).

TABLE 1

Details of Study Consultations

ConsultNeonatologist(s)Consult Length, Time; Line CountIndication(s) for ConsultGA at ConsultDecision at the End of ConsultGA at Delivery
42:45; 1224 Cervical insufficiency 22 1/7 None 36 2/7 
25:23; 366 PPROM 23 6/7 TOR 32 4/7 
B, J 40:51; 612 Cervical insufficiency, Premature onset of labor 23 1/7 None 23 4/7 
56:44; 669 Preeclampsia, IUGR 25 1/7 TOR 25 1/7 
59:44; 783 Cervical insufficiency, PPROM 23 0/7 None 23 6/7 
41:41; 876 Premature onset of labor 23 5/7 TOR 24 1/7 
E, G 39:31; 484 Vaginal bleeding, premature onset of labor 22 5/7 CMO 24 0/7 
38:12; 374 PPROM 23 1/7 TOR 26 0/7 
21:12; 576 Planned fetal surgical procedure 22 3/7 CMO LTF 
10 46:00; 697 Preeclampsia 22 3/7 None 23 4/7 
11 46:32; 739 Preeclampsia, IUGR 23 5/7 None 24 2/7 
12 44:52; 595 Premature onset of labor 22 3/7 TOR 22 5/7 
13 32:13; 636 PPROM 23 4/7 TOR 24 1/7 
14 39:22; 934 Placental abruption 22 6/7 TOR 31 6/7 
15 30:49; 415 Cervical insufficiency 23 1/7 TOR 24 4/7 
16 52:24; 574 PPROM, placental abruption 22 5/7 TOR 26 3/7 
17 36:43; 500 PPROM of twin A in di-di pregnancy 23 6/7 TOR 28 4/7 
18 33:56; 834 PPROM 24 2/7 None 26 2/7 
19 48:05; 781 PPROM, premature onset of labor 22 5/7 None 22 6/7 
20 64:00; 942 Premature onset of labor, vaginal bleeding 24 5/7 None 24 5/7 
21 48:37; 574 PPROM, vaginal bleeding 23 0/7 TOR 24 3/7 
22 38:14; 643 PPROM 23 0/7 TOR 29 5/7 
23 51:16; 689 Vaginal bleeding, cervical insufficiency 22 5/7 TOR 37 0/7 
24 67:00; 1232 PPROM 22 3/7 CMO 23 2/7 
25 39:31; 651 PPROM 21 2/7 TOR 26 2/7 
ConsultNeonatologist(s)Consult Length, Time; Line CountIndication(s) for ConsultGA at ConsultDecision at the End of ConsultGA at Delivery
42:45; 1224 Cervical insufficiency 22 1/7 None 36 2/7 
25:23; 366 PPROM 23 6/7 TOR 32 4/7 
B, J 40:51; 612 Cervical insufficiency, Premature onset of labor 23 1/7 None 23 4/7 
56:44; 669 Preeclampsia, IUGR 25 1/7 TOR 25 1/7 
59:44; 783 Cervical insufficiency, PPROM 23 0/7 None 23 6/7 
41:41; 876 Premature onset of labor 23 5/7 TOR 24 1/7 
E, G 39:31; 484 Vaginal bleeding, premature onset of labor 22 5/7 CMO 24 0/7 
38:12; 374 PPROM 23 1/7 TOR 26 0/7 
21:12; 576 Planned fetal surgical procedure 22 3/7 CMO LTF 
10 46:00; 697 Preeclampsia 22 3/7 None 23 4/7 
11 46:32; 739 Preeclampsia, IUGR 23 5/7 None 24 2/7 
12 44:52; 595 Premature onset of labor 22 3/7 TOR 22 5/7 
13 32:13; 636 PPROM 23 4/7 TOR 24 1/7 
14 39:22; 934 Placental abruption 22 6/7 TOR 31 6/7 
15 30:49; 415 Cervical insufficiency 23 1/7 TOR 24 4/7 
16 52:24; 574 PPROM, placental abruption 22 5/7 TOR 26 3/7 
17 36:43; 500 PPROM of twin A in di-di pregnancy 23 6/7 TOR 28 4/7 
18 33:56; 834 PPROM 24 2/7 None 26 2/7 
19 48:05; 781 PPROM, premature onset of labor 22 5/7 None 22 6/7 
20 64:00; 942 Premature onset of labor, vaginal bleeding 24 5/7 None 24 5/7 
21 48:37; 574 PPROM, vaginal bleeding 23 0/7 TOR 24 3/7 
22 38:14; 643 PPROM 23 0/7 TOR 29 5/7 
23 51:16; 689 Vaginal bleeding, cervical insufficiency 22 5/7 TOR 37 0/7 
24 67:00; 1232 PPROM 22 3/7 CMO 23 2/7 
25 39:31; 651 PPROM 21 2/7 TOR 26 2/7 

CMO, comfort measures only; di-di, dichorionic-diamniotic; GA, gestational age in weeks of completed pregnancy; IUGR, intrauterine growth restriction; LTF, lost to follow-up; PPROM, preterm premature rupture of membranes; TOR, trial of resuscitation.

Uncertainty was predominant in the thematic analysis of the data. Structurally, the theme of uncertainty was pervasive throughout the continuum of the consultations. Uncertainty was especially present in the pivotal moments of decision-making between the neonatologist and expectant parent(s) when determining if resuscitative measures should be provided for or withheld from the neonate at the gray zone of viability. Uncertainty was impactful and commonly identified by the physicians as complicating information delivery and decision-making. It was not uncommon to find talk of uncertainty in proximity to decision-making. At times, we observed expectant parents struggle through decision-making, even feeling stuck in the process as a result of uncertainty.

To further delineate this phenomenon, we categorized dimensions of uncertainty (Table 2). The table is organized by hierarchy of potential impact on decision-making, as determined by the study team. The uncertainties present in these consultations fit into 4 overarching, researcher-devised categories, including uncertainty about the timing of delivery, NICU course, individual characteristics (of the physician, expectant parent[s], and fetus or neonate), and consequences of the decision for the expectant family. Subcategorization, explanation of meaning, and illustrative examples from our data set for each type of uncertainty are shown in Table 2.

TABLE 2

Uncertainties Present

CategorySubtypeExplanationExample(s)a
Timing of delivery  The date, time, and gestational age of the infant at delivery “…there’s nothing that will make you look foolish like trying to guess when a baby’s going to be born.” (consult 20; line 365; neonatologist F) 
   “…perhaps the most important thing I can tell you is we don’t know when your baby is going to be born. It may not be for a long time yet, and that’s great if that’s the way it works out.” (consult 19; line 5; neonatologist F) 
NICU course Infant survival Likelihood of infant survival “Yeah, the chance of survival in your baby I would…probably be somewhere in the 50%–60% range. But you don’t really know if your baby can survive unless we actually try.” (consult 4; line 233) 
   “But really, that’s very hard to pinpoint a number to tell you he’s got a 40% chance or a 20% chance or a 60% chance because we see a huge range.” (consult 12; line 178; neonatologist B) 
 Short-term outcomes Risk of specific morbidity occurring during the NICU hospitalization and potential severity “The other thing that we worry about with babies born this early is the development of the retina in the eye. That’s something that usually develops before babies are born. But especially babies born this early, that retina develops in the back of the eye and works its way forward, and it’s something that we have the ophthalmologist help us watch just to make sure that that continues to develop normally, cause sometimes being exposed to oxygen after a baby’s born can make that development abnormal. And sometimes, the ophthalmologist would have to intervene to help make that development more normal again…And that’s something that certainly doesn’t happen for every baby but just to let you guys, again, know kind of the spectrum for things that you can expect for [baby name].” (consult 3; line 220; neonatologists B, J) 
   “…the third thing we worry about with these little guys…is whether or not their intestines can remain healthy…baby’s intestines aren’t really designed to be out in the environment quite yet…So what we do to avoid that problem is, again, keep things pretty cool for the first 3 days, nice and stable, nice and steady…So the first 5 days for [baby name], if he were born today, is really just to keep the intestines really intact so that it’s a good barrier to bugs and to help keep its functions developing…And if he gets up to full feedings without any hiccups, which happens periodically, but oftentimes, we have to kind of pump the brakes a bit, give him a day of rest at whatever level of feeding he’s at and then resume our advancement tomorrow…but if we do see that the intestines aren’t healthy, we stop feeds altogether, we start antibiotics, we treat it like it’s as serious as it can be because it can be life-threatening; and for kids who survive, having had that problem, it can be life-altering.” (consult 21; line 317; neonatologist C) 
 Long-term outcomes Risk of specific morbidity past the initial NICU hospitalization and potential severity “And that’s where things become hard is because we have babies that survive the NICU and have severe and sometimes even profound disability and we have babies that survive and go home from the NICU that don’t.” (consult 14; line 164; neonatologist E) 
   “...but there absolutely are long-term survivors who…we know have gone on to get to graduate high school and moving on into adulthood, but this is the first generation we can say that so we don’t know all the effects long-term because we haven’t had decades and decades of survivors for babies born at 22, 23, 24 weeks…” (consult 12; line 393; neonatologist B) 
 Postnatal diagnosis Accuracy and ability to predict “…because that’s not a perfect test [head ultrasound]. It doesn’t tell us everything we need to know, but it does gives us a pretty good sense of the sorts of issues babies might have to deal with down the line.” (consult 10; line 239; neonatologist C) 
 Length of stay Duration of initial NICU hospitalization “If things are more complicated, it can easily be longer depending on how the lungs do and there can be intestine problems There’s a lot of things that can slow things down. So, it can definitely be longer than that.” (consult 23; line 362; neonatologist F) 
Individual characteristics Of physician Specific role during clinical encounter (which decisions the provider is and is not responsible for) “So, this gets confusing for families about who is making which decisions, but when to deliver and how to deliver your baby is up to the obstetricians and the Maternal Fetal Medicine folks. I’m not an obstetrician and I’m not a Fetal Medicine doctor. I take care of premature babies like the one that you’re currently carrying and help families sort through what to do when the baby is delivered and to prepare you for what may happen when the baby is delivered.” (consult 4; line 48; neonatologist D) 
 Of expectant parent Baseline knowledge, background, readiness for discussion and decision-making, hopes and/or worries for their child, and health “Most of the time parents say ‘doc could you at least try taking care of the baby?’ and we can but we wanna be sure that makes sense and is the right thing from the parents perspective as well.” (consult 22; line 114; neonatologist I) 
 Of fetus or neonate Gestational age, sex, singleton versus multiple pregnancy, exposure to betamethasone, prenatal diagnosis of congenital anomalies or genetic condition, and individual’s ability to perform versus population statistics “Our best guess is we’re at 22 weeks and 5 days…we don’t know exactly where we are…And that’s kind of a big deal because—”/Pregnant woman: “A matter of a week can make a huge difference.”/“Exactly, yeah, we’re right at a very delicate spot, right w[h]ere survival chances area really starting to go [up].” (consult 19; line 40; neonatologist F) 
   “…there’s a lot of variables, the steroid status; baby boys have worse outcomes than baby girls at this gestational age. They tend to be about 1-week more premature…and then the actual size he is when he’s born, those are the kind of things that help narrow it down.” (consult 12; line 181; neonatologist B) 
Consequences of decision for the family Ethical and/or moral Avoidance of regret Pregnant woman: “I don’t want unrealistic ex[pectations].”/Expectant father: “If there’s a chance, some chance of having a kid that has a good quality of life.”/Pregnant woman: “Yeah.”/Expectant father: “You wouldn’t want to play ‘what if’ your whole life.” (consult 24; line 297; neonatologist D) 
  Expectant parental perception of quality of life and acceptability of prognosis Pregnant woman: “I have to make peace with the risk of regret.” (consult 24; line 875; neonatologist D) 
 Logistics Financial, living situation, and family situation “We’d have to work that out, and that’s where our social worker gets involved and, and talks with your insurance, whatever your arrangements are and just working on how do we get you guys home and, or at least closer to home, and sometimes we can do that, and sometimes it doesn’t work out for just all of the health care financing problems but we can try to do that if we, uh, if things are nice and stable and we can do that.” (consult 20; line 329; neonatologist F) 
 External perception of decision Expectant parental concern for others’ acceptance of their decision Pregnant woman: “...do you guys go back in your back room and be like, God those [family’s last name] are so dumb; what are they doing? Like if only they knew, they could just make better decisions and let this baby go.” (consult 24; line 660; neonatologist D) 
CategorySubtypeExplanationExample(s)a
Timing of delivery  The date, time, and gestational age of the infant at delivery “…there’s nothing that will make you look foolish like trying to guess when a baby’s going to be born.” (consult 20; line 365; neonatologist F) 
   “…perhaps the most important thing I can tell you is we don’t know when your baby is going to be born. It may not be for a long time yet, and that’s great if that’s the way it works out.” (consult 19; line 5; neonatologist F) 
NICU course Infant survival Likelihood of infant survival “Yeah, the chance of survival in your baby I would…probably be somewhere in the 50%–60% range. But you don’t really know if your baby can survive unless we actually try.” (consult 4; line 233) 
   “But really, that’s very hard to pinpoint a number to tell you he’s got a 40% chance or a 20% chance or a 60% chance because we see a huge range.” (consult 12; line 178; neonatologist B) 
 Short-term outcomes Risk of specific morbidity occurring during the NICU hospitalization and potential severity “The other thing that we worry about with babies born this early is the development of the retina in the eye. That’s something that usually develops before babies are born. But especially babies born this early, that retina develops in the back of the eye and works its way forward, and it’s something that we have the ophthalmologist help us watch just to make sure that that continues to develop normally, cause sometimes being exposed to oxygen after a baby’s born can make that development abnormal. And sometimes, the ophthalmologist would have to intervene to help make that development more normal again…And that’s something that certainly doesn’t happen for every baby but just to let you guys, again, know kind of the spectrum for things that you can expect for [baby name].” (consult 3; line 220; neonatologists B, J) 
   “…the third thing we worry about with these little guys…is whether or not their intestines can remain healthy…baby’s intestines aren’t really designed to be out in the environment quite yet…So what we do to avoid that problem is, again, keep things pretty cool for the first 3 days, nice and stable, nice and steady…So the first 5 days for [baby name], if he were born today, is really just to keep the intestines really intact so that it’s a good barrier to bugs and to help keep its functions developing…And if he gets up to full feedings without any hiccups, which happens periodically, but oftentimes, we have to kind of pump the brakes a bit, give him a day of rest at whatever level of feeding he’s at and then resume our advancement tomorrow…but if we do see that the intestines aren’t healthy, we stop feeds altogether, we start antibiotics, we treat it like it’s as serious as it can be because it can be life-threatening; and for kids who survive, having had that problem, it can be life-altering.” (consult 21; line 317; neonatologist C) 
 Long-term outcomes Risk of specific morbidity past the initial NICU hospitalization and potential severity “And that’s where things become hard is because we have babies that survive the NICU and have severe and sometimes even profound disability and we have babies that survive and go home from the NICU that don’t.” (consult 14; line 164; neonatologist E) 
   “...but there absolutely are long-term survivors who…we know have gone on to get to graduate high school and moving on into adulthood, but this is the first generation we can say that so we don’t know all the effects long-term because we haven’t had decades and decades of survivors for babies born at 22, 23, 24 weeks…” (consult 12; line 393; neonatologist B) 
 Postnatal diagnosis Accuracy and ability to predict “…because that’s not a perfect test [head ultrasound]. It doesn’t tell us everything we need to know, but it does gives us a pretty good sense of the sorts of issues babies might have to deal with down the line.” (consult 10; line 239; neonatologist C) 
 Length of stay Duration of initial NICU hospitalization “If things are more complicated, it can easily be longer depending on how the lungs do and there can be intestine problems There’s a lot of things that can slow things down. So, it can definitely be longer than that.” (consult 23; line 362; neonatologist F) 
Individual characteristics Of physician Specific role during clinical encounter (which decisions the provider is and is not responsible for) “So, this gets confusing for families about who is making which decisions, but when to deliver and how to deliver your baby is up to the obstetricians and the Maternal Fetal Medicine folks. I’m not an obstetrician and I’m not a Fetal Medicine doctor. I take care of premature babies like the one that you’re currently carrying and help families sort through what to do when the baby is delivered and to prepare you for what may happen when the baby is delivered.” (consult 4; line 48; neonatologist D) 
 Of expectant parent Baseline knowledge, background, readiness for discussion and decision-making, hopes and/or worries for their child, and health “Most of the time parents say ‘doc could you at least try taking care of the baby?’ and we can but we wanna be sure that makes sense and is the right thing from the parents perspective as well.” (consult 22; line 114; neonatologist I) 
 Of fetus or neonate Gestational age, sex, singleton versus multiple pregnancy, exposure to betamethasone, prenatal diagnosis of congenital anomalies or genetic condition, and individual’s ability to perform versus population statistics “Our best guess is we’re at 22 weeks and 5 days…we don’t know exactly where we are…And that’s kind of a big deal because—”/Pregnant woman: “A matter of a week can make a huge difference.”/“Exactly, yeah, we’re right at a very delicate spot, right w[h]ere survival chances area really starting to go [up].” (consult 19; line 40; neonatologist F) 
   “…there’s a lot of variables, the steroid status; baby boys have worse outcomes than baby girls at this gestational age. They tend to be about 1-week more premature…and then the actual size he is when he’s born, those are the kind of things that help narrow it down.” (consult 12; line 181; neonatologist B) 
Consequences of decision for the family Ethical and/or moral Avoidance of regret Pregnant woman: “I don’t want unrealistic ex[pectations].”/Expectant father: “If there’s a chance, some chance of having a kid that has a good quality of life.”/Pregnant woman: “Yeah.”/Expectant father: “You wouldn’t want to play ‘what if’ your whole life.” (consult 24; line 297; neonatologist D) 
  Expectant parental perception of quality of life and acceptability of prognosis Pregnant woman: “I have to make peace with the risk of regret.” (consult 24; line 875; neonatologist D) 
 Logistics Financial, living situation, and family situation “We’d have to work that out, and that’s where our social worker gets involved and, and talks with your insurance, whatever your arrangements are and just working on how do we get you guys home and, or at least closer to home, and sometimes we can do that, and sometimes it doesn’t work out for just all of the health care financing problems but we can try to do that if we, uh, if things are nice and stable and we can do that.” (consult 20; line 329; neonatologist F) 
 External perception of decision Expectant parental concern for others’ acceptance of their decision Pregnant woman: “...do you guys go back in your back room and be like, God those [family’s last name] are so dumb; what are they doing? Like if only they knew, they could just make better decisions and let this baby go.” (consult 24; line 660; neonatologist D) 
a

Physician speaking unless otherwise noted.

Although the sheer presence of uncertainty played a pivotal role in the encounters, the physicians’ responses to uncertainty were equally impactful. Provider responses fit into 5 broad, researcher-developed categories. From these, we subsequently devised a taxonomy of strategies used by neonatologists to actively manage uncertainty (Table 3). Each category of uncertainty was managed with different responses and/or strategies both throughout any single encounter and between encounters.

  1. Provide more information: The most common provider response in the face of uncertainty was to provide additional information. It was not uncommon to observe information delivery as large sections of provider monologue, with limited interaction or response from expectant parent(s) (Fig 1).

TABLE 3

Physician Responses to Uncertainty

CategorySubcategoryExplanationExamplesa
Provide more information Statistics and/or numeric data Description of population statistics, translating into risk of mortality and morbidity “Babies that are born premature, and regardless of what may happen in the NICU, there is a risk of 10%–20% of cerebral palsy.” (consult 14; line 143; neonatologist E) 
“…if you tried to save the life of a hundred babies who were born in this exact same condition that your son is in: 25 weeks, 400 grams with concerning patterns on the way the baby is getting nutrients and blood flow, the chance of survival would be 50%–60%. So, of the 100 babies that you did everything that you could, 50–60 of those 100 babies would survive. Now, of the we’ll say optimistically 60 babies who survived, your question then is how many of those will go on to have long-term problems like cerebral palsy and issues with learning and keep[ing] up with their classmates. And I would say probably 30%–50% of the babies who did survive would have long-term issues with learning issues or problems with cerebral palsy…” (consult 4; line 326; neonatologist D) 
Spectrum of possibilities Providing a wide array of possible outcomes, often a continuum “…cerebral palsy can be something that’s strictly motor in that it affects the ability of the muscles to move in coordination with the brain. And for any premature baby, they are at risk to have some degree of cerebral palsy, and that’s where it gets a little bit difficult to predict whether there’ll be any cerebral palsy or how severe it will be. For some babies that are born extremely premature, maybe they can’t walk, and they may be in a wheelchair. For others, it may be just very, very mild and that they get extra physical therapy and their parents know that’s there, but it may not be something that’s even that apparent when they go off to school.” (consult 17; line 187; neonatologist E) 
“For some babies, what does it mean to be affected by prematurity? It means ‘Well, I took a little bit longer to grow and catch up in how big I was, and I’m a little bit more clumsy as I learn my motor skills, but the neighbors, my friends, no one else knows.’ For some kids it means ‘I was doing great; but when I got to third and fourth grade, I really had trouble paying attention in class, and that seemed to be more challenging for me than my friends.’ For other children, it may mean ‘I need a ventilator for several months.’” Rarely, a baby even goes home with a ventilator.” (consult 3; line 408; neonatologist B, J) 
Specific details Outlining the neonatal teams’ actions or response to certain outcomes. Often includes describing the physical space and team mechanics of the hospital system “I would place a breathing tube into his airway to help him breathe because almost certainly his lungs wouldn’t be able to bring oxygen into his blood like they need to and so I would have to help him my best by placing a breathing tube into his airway.” (consult 10; line 87; neonatologist C) 
“…when the baby’s born… the first thing we’ll do is let the baby just sort of sit there still on the umbilical cord. Well, in most situations, we can do this and let a little extra blood go from the placenta to the baby. So, we don’t clamp the umbilical cord right away, most of the time, unless the baby really isn’t doing anything and we’re really concerned, like we need to get this baby some help right now. Then, we’ll take the baby to another room right next door. There’s actually a door between the 2 rooms, so we don’t have to go out in the hallway, and we’ll focus right away on keeping the baby warm, getting breathing started, and then pretty quickly, we’ll want to get IVs in.” (consult 20; line 368; neonatologist F) 
Experiential knowledge Storytelling (explaining what the provider has observed through their career) “Used to be that earlier in my career, everything hinged on how the lungs were doing. Were the lungs mature enough so that the baby could survive? And when babies didn’t make it, if they didn’t survive, it could be you know hours to days before they died cause usually their lungs or sometimes their blood pressure wasn’t good. That can still happen, but now days when our youngest babies die, it is less likely to be in the first hours to days…” (consult 11; line 405; neonatologist I) 
“That’s how things tend to go, for what that’s worth. I’ve taken care of kids that have gone through the whole spectrum. I’ve taken care of kids who haven’t made it. I’ve taken care of kids who need a wheelchair to get around and have a lot of problems.” (consult 20; line 579; neonatologist F) 
Identify when and/or how more certainty may be gained Description of critical moments of information gathering specific to the individual neonate “We resuscitate, we do full intensive care. That middle ground is we do a trial of resuscitation; so we do the resuscitation, we see how baby responds, we may go to the NICU, and then see how things go. [We] evaluate how are his lungs working? Are they working well enough we can support him? How is his brain doing? And we have nice points where we can sit down and talk about all of those things and how he is responding to our intervention and care.” (consult 2; line 281; neonatologist H) 
“After birth, we routinely, in the first week of life, will screen for bleeding in the brain with the head ultrasound, and we do another head ultrasound much closer to your due date to look for evidence of any injury of hypoxia or lack of oxygen. Well, that’s a long time to wait and, truthfully, I feel like families have to wait even longer. Because the ultimate brain test is really is our developmental skills.” (consult 16; line 205; neonatologist B) 
“…in the face of uncertainty, let’s try to do things that will… give the baby a chance and preserve the opportunity for parents to help decide… do we continue with medicines and machines… or is it just not working out for this particular baby… sometimes, that becomes apparent over time…” (consult 6; line 507; neonatologist I) 
Acknowledging the limits of medicine  Inability of medical practice, knowledge, and/or the community to provide clarity or meaningful intervention “…I just don’t have any good way of predicting when or how long are you going to be pregnant (laughs). I certainly don’t know that. And even if I knew, okay this is going to be the day, there’s no way I could tell you how things are going to turn out in terms of survival and what he’d have to go through to get there, and how are things going to turn out in the long run. There’s just no way to know, and that’s the really hard thing about all of this.” (consult 19; line 222; neonatologist F) 
Pregnant woman: “that’s one of the things that is so frustrating about medicine. I mean, obviously, you have to make some boundaries, but it seems so arbitrary sometimes” (consult 24; line 483; neonatologist D) 
Acknowledgment and acceptance of uncertainty  Naming of uncertainty in a specific situation; accepting that uncertainty exists, and it cannot always be modified “We’re in a tight spot because there is not a lot of clear answers at this point or clear predictions of exactly how your baby will do. That’s hard to make decisions when there is uncertainty about that.” (consult 14; line 550; neonatologist E) 
“…what we’re dealing with, again, is a lot of uncertainty about what’s going to happen with this little guy when he’s ultimately delivered and the inability to predict how he’s going to do either during the first couple of hours after he’s born or, ultimately, what’s he’s going to be like if he were to survive when he’s 10 or 20 years old. Those conversations haven’t really changed much. We don’t have a lot of new meaningful data to say ‘wow, we’ve got a big game-changer here’.” (consult 24; line 490; neonatologist D) 
Holding hope  To remain hopeful for a positive outcome in the face of uncertainty “The fact is that we deal with a lot of uncertainty at this point in the pregnancy when we talk to moms and dads about what to expect. And we worry about some of those outcomes that I talked about, some of those complications that I talked about. Though balance it out with being hopeful that about half the babies will survive, and half of those babies will survive with good outcome.” (consult 17; line 242; neonatologist E) 
“…it’s hard to add any degree of certainty because the fact is there is reason to worry, and that’s the doom and gloom part of the conversation. And then there is reason to be hopeful, too, and that I absolutely care for babies at 23 weeks that have had long intensive care courses that have gone home, and they come back and visited me years later, and they’re very, very well and are going to school and may be wearing glasses from, you know, complications with the eyes to related to prematurity, but otherwise have very good quality of life and their parents are very, very hap[py].” (consult 14; line 585; neonatologist E) 
Pregnant woman: “…my brain is saying you need to do comfort care; this is like just completely ridiculous; let’s not go through this; let’s not put the baby through this. But then my heart is like…”/Expectant father: “What if?” (consult 24; line 849; neonatologist D) 
Relationship building  Building a relationship between provider and expectant family. May take many forms, including but not limited to the following: providing reassurance, promise of future provider availability, promise of truthfulness, listening to expectant parents and/or to the neonate, and checking for understanding “Until the day that we can predict the future, everything that we do comes from good communication. I tell you what I’m thinking. My partners tell you what they’re thinking, and by the same token, it’s very helpful if you tell us what you’re thinking.” (consult 5; line 110; neonatologist A) 
“And I certainly, despite having many of these conversations, can’t even being to imagine what it’s like as a mom and dad.” (consult 14; line 255; neonatologist E) 
“…really that kind of critical window is at 22 to 24 weeks where we’d really want to partner with you and your husband [to] determine what will be best here as you move through the next couple of weeks.” (consult 1; line 236; neonatologist H) 
CategorySubcategoryExplanationExamplesa
Provide more information Statistics and/or numeric data Description of population statistics, translating into risk of mortality and morbidity “Babies that are born premature, and regardless of what may happen in the NICU, there is a risk of 10%–20% of cerebral palsy.” (consult 14; line 143; neonatologist E) 
“…if you tried to save the life of a hundred babies who were born in this exact same condition that your son is in: 25 weeks, 400 grams with concerning patterns on the way the baby is getting nutrients and blood flow, the chance of survival would be 50%–60%. So, of the 100 babies that you did everything that you could, 50–60 of those 100 babies would survive. Now, of the we’ll say optimistically 60 babies who survived, your question then is how many of those will go on to have long-term problems like cerebral palsy and issues with learning and keep[ing] up with their classmates. And I would say probably 30%–50% of the babies who did survive would have long-term issues with learning issues or problems with cerebral palsy…” (consult 4; line 326; neonatologist D) 
Spectrum of possibilities Providing a wide array of possible outcomes, often a continuum “…cerebral palsy can be something that’s strictly motor in that it affects the ability of the muscles to move in coordination with the brain. And for any premature baby, they are at risk to have some degree of cerebral palsy, and that’s where it gets a little bit difficult to predict whether there’ll be any cerebral palsy or how severe it will be. For some babies that are born extremely premature, maybe they can’t walk, and they may be in a wheelchair. For others, it may be just very, very mild and that they get extra physical therapy and their parents know that’s there, but it may not be something that’s even that apparent when they go off to school.” (consult 17; line 187; neonatologist E) 
“For some babies, what does it mean to be affected by prematurity? It means ‘Well, I took a little bit longer to grow and catch up in how big I was, and I’m a little bit more clumsy as I learn my motor skills, but the neighbors, my friends, no one else knows.’ For some kids it means ‘I was doing great; but when I got to third and fourth grade, I really had trouble paying attention in class, and that seemed to be more challenging for me than my friends.’ For other children, it may mean ‘I need a ventilator for several months.’” Rarely, a baby even goes home with a ventilator.” (consult 3; line 408; neonatologist B, J) 
Specific details Outlining the neonatal teams’ actions or response to certain outcomes. Often includes describing the physical space and team mechanics of the hospital system “I would place a breathing tube into his airway to help him breathe because almost certainly his lungs wouldn’t be able to bring oxygen into his blood like they need to and so I would have to help him my best by placing a breathing tube into his airway.” (consult 10; line 87; neonatologist C) 
“…when the baby’s born… the first thing we’ll do is let the baby just sort of sit there still on the umbilical cord. Well, in most situations, we can do this and let a little extra blood go from the placenta to the baby. So, we don’t clamp the umbilical cord right away, most of the time, unless the baby really isn’t doing anything and we’re really concerned, like we need to get this baby some help right now. Then, we’ll take the baby to another room right next door. There’s actually a door between the 2 rooms, so we don’t have to go out in the hallway, and we’ll focus right away on keeping the baby warm, getting breathing started, and then pretty quickly, we’ll want to get IVs in.” (consult 20; line 368; neonatologist F) 
Experiential knowledge Storytelling (explaining what the provider has observed through their career) “Used to be that earlier in my career, everything hinged on how the lungs were doing. Were the lungs mature enough so that the baby could survive? And when babies didn’t make it, if they didn’t survive, it could be you know hours to days before they died cause usually their lungs or sometimes their blood pressure wasn’t good. That can still happen, but now days when our youngest babies die, it is less likely to be in the first hours to days…” (consult 11; line 405; neonatologist I) 
“That’s how things tend to go, for what that’s worth. I’ve taken care of kids that have gone through the whole spectrum. I’ve taken care of kids who haven’t made it. I’ve taken care of kids who need a wheelchair to get around and have a lot of problems.” (consult 20; line 579; neonatologist F) 
Identify when and/or how more certainty may be gained Description of critical moments of information gathering specific to the individual neonate “We resuscitate, we do full intensive care. That middle ground is we do a trial of resuscitation; so we do the resuscitation, we see how baby responds, we may go to the NICU, and then see how things go. [We] evaluate how are his lungs working? Are they working well enough we can support him? How is his brain doing? And we have nice points where we can sit down and talk about all of those things and how he is responding to our intervention and care.” (consult 2; line 281; neonatologist H) 
“After birth, we routinely, in the first week of life, will screen for bleeding in the brain with the head ultrasound, and we do another head ultrasound much closer to your due date to look for evidence of any injury of hypoxia or lack of oxygen. Well, that’s a long time to wait and, truthfully, I feel like families have to wait even longer. Because the ultimate brain test is really is our developmental skills.” (consult 16; line 205; neonatologist B) 
“…in the face of uncertainty, let’s try to do things that will… give the baby a chance and preserve the opportunity for parents to help decide… do we continue with medicines and machines… or is it just not working out for this particular baby… sometimes, that becomes apparent over time…” (consult 6; line 507; neonatologist I) 
Acknowledging the limits of medicine  Inability of medical practice, knowledge, and/or the community to provide clarity or meaningful intervention “…I just don’t have any good way of predicting when or how long are you going to be pregnant (laughs). I certainly don’t know that. And even if I knew, okay this is going to be the day, there’s no way I could tell you how things are going to turn out in terms of survival and what he’d have to go through to get there, and how are things going to turn out in the long run. There’s just no way to know, and that’s the really hard thing about all of this.” (consult 19; line 222; neonatologist F) 
Pregnant woman: “that’s one of the things that is so frustrating about medicine. I mean, obviously, you have to make some boundaries, but it seems so arbitrary sometimes” (consult 24; line 483; neonatologist D) 
Acknowledgment and acceptance of uncertainty  Naming of uncertainty in a specific situation; accepting that uncertainty exists, and it cannot always be modified “We’re in a tight spot because there is not a lot of clear answers at this point or clear predictions of exactly how your baby will do. That’s hard to make decisions when there is uncertainty about that.” (consult 14; line 550; neonatologist E) 
“…what we’re dealing with, again, is a lot of uncertainty about what’s going to happen with this little guy when he’s ultimately delivered and the inability to predict how he’s going to do either during the first couple of hours after he’s born or, ultimately, what’s he’s going to be like if he were to survive when he’s 10 or 20 years old. Those conversations haven’t really changed much. We don’t have a lot of new meaningful data to say ‘wow, we’ve got a big game-changer here’.” (consult 24; line 490; neonatologist D) 
Holding hope  To remain hopeful for a positive outcome in the face of uncertainty “The fact is that we deal with a lot of uncertainty at this point in the pregnancy when we talk to moms and dads about what to expect. And we worry about some of those outcomes that I talked about, some of those complications that I talked about. Though balance it out with being hopeful that about half the babies will survive, and half of those babies will survive with good outcome.” (consult 17; line 242; neonatologist E) 
“…it’s hard to add any degree of certainty because the fact is there is reason to worry, and that’s the doom and gloom part of the conversation. And then there is reason to be hopeful, too, and that I absolutely care for babies at 23 weeks that have had long intensive care courses that have gone home, and they come back and visited me years later, and they’re very, very well and are going to school and may be wearing glasses from, you know, complications with the eyes to related to prematurity, but otherwise have very good quality of life and their parents are very, very hap[py].” (consult 14; line 585; neonatologist E) 
Pregnant woman: “…my brain is saying you need to do comfort care; this is like just completely ridiculous; let’s not go through this; let’s not put the baby through this. But then my heart is like…”/Expectant father: “What if?” (consult 24; line 849; neonatologist D) 
Relationship building  Building a relationship between provider and expectant family. May take many forms, including but not limited to the following: providing reassurance, promise of future provider availability, promise of truthfulness, listening to expectant parents and/or to the neonate, and checking for understanding “Until the day that we can predict the future, everything that we do comes from good communication. I tell you what I’m thinking. My partners tell you what they’re thinking, and by the same token, it’s very helpful if you tell us what you’re thinking.” (consult 5; line 110; neonatologist A) 
“And I certainly, despite having many of these conversations, can’t even being to imagine what it’s like as a mom and dad.” (consult 14; line 255; neonatologist E) 
“…really that kind of critical window is at 22 to 24 weeks where we’d really want to partner with you and your husband [to] determine what will be best here as you move through the next couple of weeks.” (consult 1; line 236; neonatologist H) 
a

Physician speaking unless otherwise noted.

FIGURE 1

Example of information delivery represented by large sections of provider monologue, with limited interaction or response from the expectant parent(s). IV, intravenous line.

FIGURE 1

Example of information delivery represented by large sections of provider monologue, with limited interaction or response from the expectant parent(s). IV, intravenous line.

Close modal

 Neonatologists provided a variety of information (ie, risk of mortality and morbidities) and relayed them by a variety of means (ie, statistics and experiential storytelling). During each encounter, neonatologists discussed when and how more certainty may be gained. Passage of time was commonly mentioned as a modality for gaining certainty regarding outcomes. Providers also stated key checkpoints during the neonate’s life that create certainty. These included response to resuscitation, early head ultrasound findings evaluating intraventricular hemorrhage, and extubation. Providers carefully described uncertainty that still remained after these checkpoints during the clinical course.

  • 2. Acknowledging the limits of medicine: Another response to uncertainty was to admit the limits of medicine and the inability to reliably predict outcomes. Providers frequently identified that uncertainty was often dependent on the boundaries of our current medical advances to converge on one anticipated outcome.

  • 3. Acknowledgment and acceptance of uncertainty: Providers responded to uncertainty by means of naming uncertainty and accepting it. Often, this response was followed by the reaffirmation of the need to make a decision despite the uncertainty. The data revealed an underlying desire of expectant parents and neonatologists alike to eradicate uncertainty entirely, paired with the realization that this desire could not be actualized.

  • 4. Holding hope: Providers sought to remain hopeful with expectant families during these difficult encounters. Holding hope was a tool often used by providers after outlining the spectrum of possible outcomes. The presence of uncertainty allowed for the ability to hope because negative outcomes had yet to become reality. One poignant example (Table 3) was when an expectant family expressed feeling unwanted certainty their son would die and was searching for an opportunity to reopen a window of uncertainty.

  • 5. Relationship building: In the face of a difficult and time-pressured encounter, providers often turned toward building a relationship with the expectant family. They made promises to be a truthful partner who would be present along the journey to revisit conversations, reassess decisions, offer support, provide reassurance when able, and give information when needed. Neonatologists sought to empower expectant parents to make an informed decision by asking their understanding regarding the information provided. At times, sensitive to the undesirability of the subject matter, they asked permission to provide more information or explain further. Neonatologists also sought to reengage expectant parents within the consultation via various methods (ie, broad, open-ended questions; small talk; and humor). These refocused the dialogue onto the expectant parents, provided relief from the gravity of the conversation, and humanized the physician.

In this qualitative study of 25 pregnant women anticipating delivery in the gray zone of viability, uncertainty was ubiquitous. Our analysis of the types of uncertainty named in those conversations builds on the real conversations between expectant families and care teams and avoids the abstraction and artificiality of previously published high-fidelity simulation experiences16  and is free from the recall bias of previously published postconsultative interviews.17 

Prognostic uncertainty is common in medicine and can serve different functions.1820  Uncertainty can be decision ratifying or that which enhances the collaborative role of physicians and expectant families in the future. Uncertainty can also be decision eroding and may serve to halt or overwhelm the ability to make decisions.14 

The functions of uncertainty emphasize the provider’s ability to actively manage it in shared decision-making. Providers may deny uncertainty in decision-making to encourage action when they are concerned that its overabundance may paralyze decision-making.14  Acknowledgment of uncertainty by a physician serves to equalize the physician and patient within their relationship and as stakeholders.14  In this way, acknowledging uncertainty may serve to strengthen the therapeutic nature of the physician-patient relationship and allow for individualization of the encounter. Uncertainty may allow for hope when prognosis is grim. Uncertainty could be reassuring within the antenatal consultation, a function which should be maintained. It is equally important to mention that acknowledgment of uncertainty does not undermine the physician’s healing effect; conversely, it may increase it as the physician demonstrates dedication to honesty and engagement in the encounter.14 

Our study can be used to challenge previous directives to deliver systematic medical information in this consult setting.10  Although these formative qualitative data cannot directly reveal the phenomenon, thorough analysis of our data has prompted us to wonder if well-meaning physicians armed with a checklist of discussion points10  may inadvertently increase the uncertainty of expectant parents using this technique. A common mistake physicians make is to assume that information is all that is needed to guide decision-making.7  Our data revealed blocks of text dominated by the physician, with little to no interaction from the expectant parent(s). During these blocks, large amounts of medical knowledge were relayed and, at times, included the use of medical jargon and terminology. We speculate that the lack of expectant parental involvement in these sections may be reflective of disengagement and perhaps a sense of being overwhelmed with unanticipated information. Although alternative explanations for limited participant interjection may include active listening or discomfort in interrupting the neonatologist, the etiology of this observation cannot be definitively concluded on the basis of these data.

Although uncertainty can be diminished, it can never be fully eliminated. When discussing observation of clinical encounters, Renée Fox, an American sociologist, wrote, “…uncertainty and death were the only certainties.”13  This is profoundly true in the antenatal decision-making for the unborn neonate at the gray zone of viability; uncertainty that even with intensive life-sustaining medical treatment the infant will survive and to what extent opposite certain death if resuscitation is withheld. It is, therefore, paramount that physicians shift from goals to eliminate uncertainty toward navigating it alongside expectant parents in these encounters.

Lantos7  suggests physicians use the antenatal consultation to map family preferences and values to provide information deemed necessary for shared decision-making. This will allow the physician to fulfill the call of the American Academy of Pediatrics toward individualized decision-making in these encounters3  and create a unified team that includes expectant parents whose unique needs are supported through this challenging time. Uncertainty is not solely an uncomfortable problem to be fixed but a necessary part of the process to prepare for and acknowledge in the care of these most vulnerable patients. Furthermore, uncertainty may be used as a tool to build trust-worthy relationships, navigate hope, and allow neonatologists to make recommendations consistent with the goals and values of expectant families.

Naturally occurring data, such as audio-recorded clinical conversations between patients and physicians, enable researchers to analyze the object of interest to them, that is, what actually occurs during clinical encounters in their natural settings, rather than interpreting practice through post hoc reports, such as interviews or abstracted representations of practice, such as through statistics or surveys.15,21  Audio recordings provide rich data for the study of talk and interaction.21  Inductive analysis provides a descriptive and exploratory interpretative knowledge of conversation in the clinical setting,15  with resultant emergent themes derived inductively from the object of our analysis15 : an audio-recorded and transcribed conversation between neonatologist and the pregnant woman.

The main limitation to the study is generalizability. As this study was conducted at a single Midwestern regional referral center, these results may not be generalizable to other locations both within the United States and worldwide. Although the study included pregnant women from different racial and ethnic backgrounds, these data may not be representative of the ideas of the sampled racial and ethnic groups as a whole. All consults were conducted in English, and thus results may not apply to encounters conducted in other languages or via interpretive services. By its nature, a qualitative study design lacks generalizability secondary to its data being derived from a specific and limited sample of the population. Although analysis of audio-recorded encounters allows for examination of real conversations, the interpretation of these analyses is limited by the lack of later follow-up with participants to clarify meaning. Providers and participants were aware of and consented to audio recording, which may have introduced performance bias because both parties were told that a study team would be analyzing their consultation despite processes to deidentify participants and anonymize the transcripts. Although each consultation was weighted equally in analysis, including those conducted by the coprimary investigator, and consultations were analyzed in a blinded fashion, the inclusion of the respective senior author had the potential to introduce sampling bias. A final limitation is that themes were not specifically derived on the basis of the role of the individual within the encounter but considered on the basis of the consultation as a whole. Despite these limitations, this study adds a unique perspective to the medical literature secondary to the use of real-life medical encounters.

Uncertainty is pervasive within the antenatal consultation for periviable neonates. Uncertainty likely plays a significant role in decision-making toward postnatal resuscitative efforts. Although uncertainty can be diminished, it can never be fully eliminated. It is possible that well-meaning neonatologists’ intent on decreasing the uncertainty of expectant parents actually may increase it via the relay of a large amount of complex medical information, although further study is required to definitively confirm such a conclusion. Using this antenatal consultation setting to build trust in the neonatologist–expectant parental relationship may help align provider and expectant parental uncertainty and aide individualized and family-centered decision-making regarding the provision or withholding of life-sustaining medical treatment of periviable neonates.

We thank Dr Jon Tilburt for lending his expertise in the field of medical uncertainty that was pivotal to the interpretation of this data set.

Dr Kaemingk contributed to data collection, design of the codebook, and data analysis and drafted the initial manuscript; Dr Carroll contributed to the design of the study, including the codebook, and data analysis; Drs Thorvilson and Schaepe contributed to the design of the codebook and data analysis; Dr Collura provided direct oversight of each step of the study, including conceptualization and design of the study, design of the codebook, supervision of data collection, and data analysis; and all authors approved the final manuscript as submitted and are accountable for all aspects of the work and accuracy and integrity of all data as presented.

FUNDING: Supported by the Mayo Clinic Children’s Research Center.

     
  • ATA

    applied thematic analysis

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Competing Interests

POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.